OUR CHANGING VALUES IN LIFE – PART 1

As we traipse along our normal daily lives, how many of us actually think about how fragile life is? How many of us actually give a damn? Well, I’ve got some news for you, dude.

There’s nothing like being in a hospital to bring you crashing down to earth in the most sober of moods. It doesn’t matter if you’re there for an hour visiting some poor unfortunate sod or if you’re that poor unfortunate sod that’s been hospitalized (like I recently was).

The effect’s the same. You look around at the broken humanity littering the hospital and immediately you feel kinda…temporary. Not so smug anymore, as you eyeball the other patients – some in their wheelchairs, some stuck to tubes and some others punctured with various needles and thingamajigs.

Allow me to be straight with you – this post is not meant to frighten you or to force my opinion or views down your throat. It’s meant to provoke your thoughts about the way you live your life and maybe, just maybe, shock you with some facts into making some positive changes.

At the risk of sounding like a sanctimonious prick, I have consciously made some changes to my own behaviour and lifestyle recently. If you don’t like the tone of this post so far, click that little icon at the top right hand side that says “close” and go look at some porn.

Otherwise, please bear with me for a recap – I suffered an attack of Jaundice last November after eating some bad prawn sambal at the Kuching airport, collapsed upon my return to KL and was hospitalised for 10 days. Lost my appetite and shed 10 kilos. (that’s about the only good thing out of this whole mess)

Now, six months later, the doctor says that the Jaundice apparently triggered an autoimmune response in my body, called a Multifocal Motor Neuropathy with conduction block, where my antibodies attacked my own nervous system along with the invading Jaundice virus infection. I guess I must have stupid DNA.

Since I first crashed last Nov, I’ve been complaining to the doctors that both my hands are numb and my back gets “jammed” after awhile, particularly if I’m standing for an extended period of time.

I was told that it could be a side effect, and that there is no cure for Jaundice – “you just have to let it run its course”. Ok, I thought. Let the bugger run its bloody course, then. I was discharged from the hospital and sent home. However, my hands got weaker over time and my fingers jammed up stiff.

Ok I thought. I’m not stupid - I’ll have to spend some money to get answers. So off I went to the Taman Desa Medical Center for a thorough check-up. Why Taman Desa Medical Center? Because I stay there and it was convenient. Cost me a pretty penny too, as they had a field day pricking and poking and jabbing and extracting and x-raying. Oh, they grabbed blood and urine samples too, so I guess you get an idea of how much fun I had.

The good doctor (the gold-plated sign on his door said specialist) surprised me when he asked if I had lifted weights when I was younger. “Yes”, I said, “I was seriously into bodybuilding”. “Aha” he went, giving a triumphant smile, “You could have injured your back with all that lifting” while he looked accusingly at the x-rays as if they were responsible for my misfortune.

He recommended physiotherapy three times a week and an iron rod filled brace-belt. I tearfully forked out my hard earned moolah and started walking around like Robocop minus the thumping footstep sound effects. I also religiously went for physiotherapy, no prizes for saying “three times a week” in unison. Cost me good money to lie on a bed and be stretched in gawdawful ways by a stupid machine.

My hands and back got worse. I couldn’t even brush my own teeth or pull up the zipper on my pants, my hands were that weak. (don’t ask, cos I’m not telling) Ok dude, I sez to myself. Time to stop dealing with wankers – I need my hands back. Time to pull out all the stops.

I made an appointment with a big name Specialist Neurologist at Sunway Medical Center who charged an arm and a leg just to look at my arm and leg. Then she ran a series of tests on me, at RM300 per test. Ouch. She also ran electric current through my body in ever increasing amounts until I was practically flopping off the bed with each shot. Fucking ouch big time.

At least I got results. I was told I have Neuropathy. Huh? WTF? This basically means my nervous system was inflamed by the virus attack. However, the specialist hemmed and hawed when I asked her how long it would take for me to recover, coming out with such gems as “case by case basis” “all indications point to” and “based on what we have observed, we may infer that…”

Isn’t the English language beautiful? We can say so much without saying anything at all. I needed answers, dammit - my quality of life was at stake.


OUR CHANGING VALUES IN LIFE – PART 2

I have a theory: Nowadays they teach medicine and law side by side, because the doctor will never give you a straight answer. Heard the term “malpractice” recently? Yeah, I didn’t think so.

Anyway I was prescribed Neurobion tablets and told to see the doctor once a week, whereupon she would repeat the tests and charge me the gdp of a small developing nation to tell me zilch. Nada. Zero. Big fat Greek nothing.

After a month of paying for her 3rd golf club membership, I got fed-up and indicated so. Besides, my credit card was on a first name basis with her receptionist. Well, she did what all good specialist doctors do – she referred me to another specialist, my 6th doctor since November 2003, a neurologist who had five prefixes before his name – Datuk, Professor, Doctor, Specialist, Neurologist. Man, I was moving up in life. I need to rob a bank real soon.

Met the Datuk Professor Doctor Specialist Neurologist at his clinic in University Malaya Specialist Center. Confirmed that his name card was the same size as everyone else’s despite his many titles. Underwent the exact same tests. When I said I had already done these tests and had brought the results along, I was told that they were not up-to-date. My nerves were zapped with electricity. I flopped on the bed like a fish out of water.

Then he nonchalantly jabbed needles into my hand and leg muscles and ran electricity into them. My eyes bulged like said fish out of water doing the death samba. Man, this was seriously not funny - I was paying this man to hurt me.

Ta dah. We’re done. I have Multifocal Motor Neuropathy with conduction block. Huh? WTF? All over again. Refer to what I explained in paragraph 7 above if you’re still awake at this point. The datuk professor doctor specialist neurologist dude wanted to reconfirm his diagnosis. He needed to do a lumbar puncture, so could I please admit myself to University Malaya Specialist Center for a day? Oh, and deposit RM2000 cash, please.

I was hearing but I wasn’t listening. I’d just remembered that I had an insurance policy for which I’d been paying RM4000+ every year. Called the bloody agent and met up with him immediately after the doctor’s. No prizes for guessing that what I have is not covered under my policy. Fuck.

Surfed the net and nearly fainted when I saw a picture of the needle used in lumbar punctures. Bloody friggin’ hell, ignorance would’ve been bliss. Lumbar punctures are done to extract Cerebro-Spinal Fluid (CSF) from the 4th or 5th vertebrae in our backbones. Paid the RM2000 deposit and got myself admitted, mainly because I wanted to get well.

The 5 x prefix doctor came in all cheerful, bright eyed and bushy tailed. “I’m just going to give you a local anesthetic in the small of your back, Mr Singh” he went. “It won’t hurt, ant bite only”. He was right. I didn’t feel a thing.

After half an hour, he came back and arranged me into a fetal position, knees almost touching my chest and my ass sticking dangerously out. I couldn’t see anything but he kept up a running commentary telling me he was wiping my lumbar area with medical alcohol etc etc to give me confidence. Then he went “Ok, Mr Singh, we’re ready to do the procedure now – you’ll feel no pain, ant bite only”.

Man, he lied big time. I felt the bloody friggin’ needle. It gave me a sourish feeling as it went in. Then he pushed it further in. By this time I was praying, probably for the fifth time in my entire life, to Guru Nanak with Christ and Buddha thrown in for good measure. They weren’t listening. Their server was down. Serves me bloody right for not believing. I’ve been a baaad boy.

Finally it was all over and I had to lie motionless on my back for five hours. Yeah, right. Lemme outta here. Met Dr Prefix the next day. He said my protein levels in the CSF were high, indicating an inflamed and blocked nervous system. Heck, I coulda told him that without the hole in my back! Sheesh.

Then the bombshell fell. The only treatment for Multifocal Motor Neuropathy with conduction block was an infusion of human immunoglobulin. The cost would be in the region of RM20000, because it was purified antibodies from human blood. There were no guarantees on results because “it's on a case by case basis, depending on how individuals respond” fill in the blanks yada yada pseudo medico-legalese talk so beloved by today’s physicians.

My head was reeling. Automatically sms-ed the news to some of my closest buddies. Some of them swung into action, forming various schemes to raise the funds. Bless their caring souls - I’m deeply touched. Thank you. I know you’re reading this. The Musicians’ association (Karyawan) where I edit "The Musician" magazine, came up with an offer to pay the medical fees on my behalf, allowing me to repay them with work as and when I’m capable. Guess all those years of helping other musicians were paying off.

Well, I got admitted at the Ipoh General Hospital so that my parents (who live in Ipoh) could visit me daily. Had a needle thingy stuck into my right hand and started an intravenous drip on the first of 40 bottles of immunoglobulin, calculated based on my body weight. For such an expensive medicine, at RM350 per bottle, I was surprised to see that it was just the size of a brands essence of chicken bottle.

It was slow going because the miracle medicine was bloody thick and I had to be constantly monitored for side effects. My blood pressure was taken every half an hour. I was given injections every morning and evening. My blood sample was taken daily. It took five days to finish the 40 bottles. I devoured 20 back issues of Reader’s Digest to keep from dying of boredom.

God bless the inventor of text messages - encouragement and support poured in. Some friends sent flowers/fruit. Some sent cards. *Sniff. Thank you, ya’ll. It’s good to know that I do have some friends besides my Mum pulling for me. *Snif again. Very touching, all this.

My parents, sister and I decided to cough up the medical costs ourselves as I didn’t want to be indebted. Not that I didn’t appreciate the offers. I sincerely do. I’m back in KL now. There is some improvement in my hand function but Dr Prefix is not too happy with my progress and wants to send me for a booster shot of immunoglobulin. He explained the way it works, but I prefer my own explanation. It’s kinda like a Tequila chaser after a beer. You reading this, Pete?

I haven’t decided yet. I’m very close to being absolutely fed-up. This sucks. Then I remember the patients in the hospital. The hollow eyes and the vacant looks. Human dolls doing whatever the nurses say, moving on autopilot. Damn. I’ve been jabbed, poked, prodded, punctured, infused, injected and electrocuted but I’m alive. Jammed hands or not, I’m friggin’ alive.

More lessons learnt in the hospital coming up...